I'm wondering what advice people have been giving regarding surgical options for a low rectal tumor that is descending into the anal canal. My surgeon here in Portland has recommended that a sphincter-saving LAR is possible, depending on how much thee tumor shrinks during surgery (i.e., it is no longer in the anal canal). Otherwise, if the tumor does not respond, he will perform an APR and I will wind up with a permanent colostomy bag. Given the sensitive location of the tumor, I went to the Mayo Clinic in Rochester for a second opinion, and they were pretty firm in their recommendation that I get an APR. They wouldn't even offer an LAR. Their view was that wherever the tumor has been, that tissue needs to go to maximize the chances of avoiding locally recurrent cancer. I felt that the Mayo recommendation made sense, although it sounded a bit conservative. Granted, they see all of the LAR procedures where sphincter saving surgery was performed and some tissue where a tumor had been had been left behind, and the cancer had come back, and all the nightmares that can bring. So, given that they see these tough cases, their viewpoint makes sense.

My Portland surgeon cited a study done out East involving several hundred patients who underwent coloanal resection as part of a sphincter saving surgery. He said the local recurrence rate was about 4-5% and that 90-95% were happy with their choice not to have an APR. He said roughly half had pretty good or normal stool control. I didn't get the author of the study, but plan to ask him.

Obviously, my number one goal is to eradicate all cancer cells from my body. If that means I have to wind up with a bag, so be it. I won't be happy with it, but I'll live it up. BUT, if there's a chance the sphincter can be saved, and that it doesn't jeopardize my health, I would want to give that a shot. Like anyone facing this, I'm concerned with quality of life issues. Both the LAR and APR have associated QoL issues. With an LAR you may have to deal with a leaky bottom. With an APR, you have to deal with a colostomy bag. My diagnosis is fairly recent (less than 1 mo ago), so I still haven't come around to the idea of living with a bag (although I've come quite a ways).

So, I'm looking for what other people have told regarding the surgical removal of tissue where a tumor HAD been as a result of pre-op chemo/radiation. Have they been told that it should be taken out (the Mayo line), or that it can be left in (my Portland surgeon's recommendation).

I can't give you any advice on the LAR vs. APR but I just wanted to say welcome and I'm sorry you have to be here. I understand your difficult decision. I was told I had to have a permanent colostomy because my tumor was so close to the anal sphincter. I checked with a colorectal surgeon (the first was a general surgeon) and was able to have an transanal excision and avoid that. I could have dealt with a bag if I had to but if I didn't have to I didn't want it. I can tell you that if I had problems pooping myself I'd rather have a bag.

Hopefully others on here that have experience with these procedures will

Hi Wombat,I'm sorry that you find yourself here but it is definitely the right place to be to search out information from a bunch of people with very first hand knowledge. This board has been invaluable to me over the past year and a half since my cancer diagnosis and continues to be post-treatment.

I had Stage 3 rectal cancer that was too low to consider a trans-anal excision. I had a polyp removed about five years ago from the same place done via excision and when it returned, we caught it too late and one lymph node was involved. The tumor itself wasn't large but as with many things..."location, location, location". Both the BC Cancer Agency and both surgeons that I consulted were very firm in stating that my best chance of cure was to go with an APR and a permanent colostomy. Based on the use of that elusive word "cure" in their sentence, the APR choice was simple. I didn't even thing twice about it. I had my surgery a year ago in December and have been living with the ostomy since then. It was a god-send during radiation, a little tricky during chemo because - let's face it - everything is tricky during chemo (!) but is now completely fine. I don't love having it, but my husband and I have adjusted to having the bag as part of my new anatomy and it hasn't stopped me from doing any of the things that I love to do. I still swim, ski, waterski, etc without the slightest of concern. And if this is what it takes to save my life, then so be it.

Your choice is such a personal one and only you will know what feels right. I wish you strength and success through this battle.

Welcome to the Colon Club! Yes, you sure do have a hard decision to make. Is your surgeon in Portland a board certified colorectal surgeon? If not, I would highly recommend getting another opinion from one locally. I had a tumor that was invading the anal sphincters and the muscles and fat in the area. It sounds like your tumor is also very close to the anus. I was told the radiated tissue would not heal properly, very thin and painful, as well as scarred and more prone to cancer returning there, so it needed to be removed. This is just my opinion, but I would opt for the APR surgery with permanent colostomy. If I was told there was a 50/50 chance of being incontinent, I would choose to be incontinent in a pouch rather than my underwear. I can tell you that I've adjusted very well to my colostomy. I can go for long trips without having to worry where the next rest stop is, hoping I can make it there. I can exercise, go for long walks, talk on the phone, eat dinner out, etc., all without the constant concern of soiling myself. It's very liberating. My output is the same now as it was before the tumor showed it's ugly face. It is quite the adjustment, but well worth all the tears, accidents, pouch failures, and trial and error mistakes until you find what works for you. I haven't had any leaks or pouch failures for well over a year. I hope you make the decision that seems best for you. Good luck with your radiation and chemo. Mary

My surgeon (board-certified colorectal surgeon from MSKCC), who research specialty is developing sphinter-preserving surgical methods, recommended for me an APR and permanent colostomy based not so much on the size of my primary tumor (it had greatly reduced) or on the lymph nodes involved (only 1/25 with any trace of cancer, and it was dead cancer) but on the original location. His reasoning was that rectal cancer is far more likely to recur than colon cancer, and it typically recurs at the original tumor site. I was an advanced stage, and about to undergo liver resection with curative intent (fingers crossed and all that.) In his estimation, there was no percentage in doing the far riskier liver resection surgery if I wasn't going to take all surgical measures possible to eliminate recurrence at the original tumor site.

I've had my colostomy since 2005. I do just about everything I used to do. What I no longer do is largely prevented by other things, not by my colostomy.

I did have a recurrence (and the side effects were much easier to manage with the ostomy.) I've now had surgery to remove even more tissue, and intraoperative radiation. Fingers crossed again. My liver, four years post-resection, appears recurrence-free.

I'm not too far from you - my surgery was done in Vancouver, Washington. I didn't think to get a second opinion at the time because I really did like my surgeon - and well, I just didn't want to go to the trouble of getting treatment in Portland since I live in north Clark County - and with 2 small kids and a husband who travels a lot - if I could get treated locally, that's what I was going to do. My surgeon was Dr. Andrea Lange. She specializes in colo-rectal surgeries and I've been told, is the best local colo-rectal surgeon (meaning Clark County - obviously there's a lot of great talent in Portland and Seattle). My tumor was right where the colon/rectum meet. She would not consider LAR - period. She would only do the APR. She said it was the only way she felt she could do a good job on removing all the cancer. All of my pre-surgery diagnostic tests showed no lymph node involvement, but she suspected there was; despite what all the tests showed. She removed 38 lymph nodes and 27 had cancer in them - but she did get clean margins. She also removed my entire rectum - she said she couldn't leave it in there - way to high of a chance of a local reccurrence. She was able to reattach my colon to my anus and after having my ileo for a year, I had take down surgery in November 2008.

What concerns me is that this study cites that "roughly half had pretty good or normal stool control" - yikes. That seems like a pretty good chance to take that you'll fall into the good half. What if you don't? Does that mean half don't have good control? To me there's one thing worse than pooping in a bag - and that's pooping in your pants. I've done plenty of both - and I'd take the bag any day.

Since you're local, if you do end up having a colostomy, there is an amazing group of ostomy nurses at Providence Medical Center - over on Glisan St. that I highly recommend. I worked with Natalie there, but I've seen others - they are all amazing. When I learned I'd have to have an ostomy, I was completely devastated. Natalie helped me come to terms with my ostomy - physically, mentally, emotionally. She helped me find supplies that worked for me, set me up with a supplier, and was always there to help me trouble shoot any problems that arose.

Feel free to PM me if I can offer any help. Best of luck with your decisions - these aren't easy decisions to make and it's a lot to sort out in your mind.

I too was a stage III rectal cancer with 6/13 nodes positive. I have a permanent colostomy today, it was my decision and I don't regret that decision because that bag gave me my life back. Radiation had destroyed most of my rectal muscles, and I was tied to the house when ever I ate due to no rectal control. My colon rectal surgeon was willing to recreate a new rectum with new muscles, be we did not know how many BM I would have on a daily basis. The goal was to get to 3 BM daily, but I could end up with 10 or more daily. In the end, I gave my surgeon carte blanc to take all she wanted, just get ALL the cancer. That was over 5 years ago and I've been cancer free since my surgery.

As other have said, this is a personal decision, but for me, it was a no brainer decision.

Hello,I am also new to this board but have spent lots of time on the UOAA board. I had a colostomy reversal in August 2009. Unfortunately my Brother also had the same tumor as mine except his was dicovered when it had gone outside the colon wall. He has stage 3 rectal cancer. He is receiving chemo and radaiton and the tumor is shrinking. My question to y'all is can anyone recomend a Colon Rectal Surgeon in Portland, Oregon? He lives in a smaller town that just has a general surgeon and due to location, it is most likely he will have a permaneant colostomy. Having said that, a second opinion is certainly worth the time.

Let me clarify my post - and by the way, I'm still blaming any/all errors I make on chemo brain, even though I finished chemo....well, awhile back....

My surgery involved cutting me open vertically from below the belly button to my c-section line. My entire rectum was removed and my colon was reconnected to my anus. I had a temp loop ileo for one year; then reversed. Not sure exactly what this is called, but that describes it. Hope that helps clarify.

I just had APR surgery because the location of the tumor really didn't allow for anything else, even after radiation/chemo. The other surgery wasn't an option for me so I don't know a lot about comparisons between the two. I can tell you that life with an ostomy isn't bad at all, it's actually been the least of my issues lately. I think it helps that I have my very supportive husband who was able to help with learning how to care for it.

APR recovery was rough for me, and I'm not telling you that to scare you. I wish someone had told me how hard it would be, I was led to believe that it would be the easiest part of my treatment. You get through it, of course.

In 2007 I was dx with Stage III rectal cancer 2.5cm from the anal verge. I had APR with rectum and anus removed. As the surgeon needed to pursue the appropriate margins to maximize the chance for cure, this was the route taken. So far it has worked-- I am cancer free.

One factor that you might consider. With cancer low in the rectum you will probably not lose much of your colon with an APR procedure. I only lost 9 inches. This is important as it means you will likely be able to do irrigation with your future colostomy. This is a very significant issue, as doing irrigation has made a very big difference in my colostomy experience. With irrigation, you infuse water usually once per day, and then there is no output and no "bag issues" for the full day until you do it again the next day. (Not the same for everyone-- your mileage may vary.) My life today is very similar/nearly identical to prior to the APR surgery. I just take more time in the bathroom each morning-- no big deal.

Thanks everyone for their responses. They've been very helpful - good food for thought. Right now, and admittedly there's a lot of treatment to go, my gut says APR - I want to maximize my chances for being cured, and I don't want to mess around with trying to make a leaky bottom work and then getting a bag anyways down the road.

I had a stage three rectal tumor and had 6 weeks chemo-radiation with a complete response (no cancer in the rectum or lymph nodes as per the pathology report). My surgery was 5-29-07 (LAR with colo-anal anastomosis with coloplasty) Then 12 treatments of folfox and then six weeks later a reversal. My surgeon said I had only 1cm to spare or I would have had a colostomy forever. I was diagnosed in Feb. 7th of 2007 and am currently clean. I had my radiation and all my surgeries at Providence St. Vincent in Portland Or. I was told by my PCP to have Megahn Cavenaugh of the colo rectal clinic in Portland to do my surgery. They are all board certified colo-rectal surgeons IMHO, they are the best group of surgeons around. I feel I owe my life to them and my radiation Doctor Dr. wheeler who is now retired. Not to mention my super oncologist Dr. Takahashi from Pacific Oncology. BTW, I have to be home when I eat dinner bur thats the only time I go, just once a day. Yes I do have that bad day every once in a while if I don't watch what I eat. BTW Mirilax has made everything so much better! If I want to go out for dinner, I plan for it a day in advance and usually have a good time out!

I really don't post often, but I also had APR surgery with permanent colostomy and I have not regretted making that choice. My surgery was in May of 2004. In June of 2005 one spot was found on my liver and I had a resection. Thank God I have been fine since and I thank the wonderful doctors at MSKCC in NY. At that time I also saw another doctor who said he could perform spinchter saving surgery. My radiologist and oncologist thought I should go for it (they were not part of the MSKCC team). The surgeon said no way you will definitely have a recurrence. You have no idea how happy I am that I made the right decision. Yes, I do have the colostomy but I irrigate every other day and I do everything and anything I want. I have a 15 year old and a 13 year old. I travel, go to the gym and I am not limited in any way. Surprisingly, my oncologist admitted to me recently that many of the patients who had the LAR surgery done had to have it reversed to a colostomy due to either recurrence or literally not being able to leave the house or have a good quality of life due to the amount of BMs a day. Remember this surgery is to save your life so you really need to research your options. Feel free to pm me if you have any questions.

I'm facing the same decision - LAR vs APR. Wondering if anyone else has any additional insights. Any studies that show incontinence with LAR <50% recently? Anyone whom got an LAR and can share their experience.

I'm 45 years old, just completed pre surgery chemo and radiation, tumor <2cm from anal verge. I have opinions from Hopkin's, Sloan kettering in NYC and my local surgeon. Hopkins said APR based on my desire for greater control and not having to plan for bathroom - the bag gives you control. I want my life to be defined by what I don, not limited by where/when I need to defecate. Based on how well the tumor shrunk from chemo and radiation Sloan says it is up to me. That reoccurrence and removal is now pretty close with APR and LAR. Recovery time and continence issues really the deciding factor with 12-18 moths retraining how to poop with LAR. I meet with local Dr for him to restage in 2 weeks, but assume he will align with Sloan based on a previous recommendation to wait and restage the tumor. All have recommend post surgery chemo.

Those that have posted previously, any additional insights, decisions made, regrets, confirmations that you did right thing? What was deciding factor in your decisions?